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March Executive Director Dish

Executive Director Update, March 2019, Written by Erin Santos

It got a little emotional. This girl is incredible!

What a month we have had since my last Executive Update.  It honestly seems like such a blur because for me personally, I haven’t been this busy in a long time.  It was one of those months where I feel like I might have taken on too much.  As usual, my team surrounds me during these times and always steps up to handle what falls off my plate.  

For me, the biggest task I had this month was the Charlotte Ballet’s Dancing the Stars event.  It was a stressful journey for me because I found myself going back and forth over what was stressing me out more.  While I knew this event was going to bring great awareness to ISF, it was difficult for me to fundraise.  The competitive nature of who I am just couldn’t shake it but my team kept assuring me where I fell in the fundraising was not the most important reason why I was doing this. Bringing awareness to the foundation and what we are doing for kids fighting cancer was the primary reason.  In the end, I raised just over $86,000 and approximately $35,000 will come back to our organization, which we are very grateful for.  I know many of our supporters were hesitant to donate because you would have preferred for 100% of your donation to come to ISF.  We get that.  And for those of you who wanted to support and have your entire donation go to us, I would love for you to donate to Isabella’s Wish Fundraiser to help us reach our $6,000 fundraising goal to gift to Make-A-Wish for a wish trip.  Did you see my latest blog about spending time with Sydney, the wish child we helped fund last year? Incredibly surreal.

My Spirit Animal (also my dance partner)

The dancing also became stressful.  My body just wasn’t doing the things I needed it to do and I felt like I was constantly in pain.  This got old and I found myself being grumpy often.  No matter how much Advil and Epson salt baths I would take, the next day of dancing would just send me back into soreness.  I’m not quite sure how these dancers do this every day.  It was eye-opening for sure.  

The night of the event couldn’t come soon enough.  I was styled by the one and only Whitely Hamlin (The Queen City Style) and Neiman Marcus provided me with the most gorgeous dress I have ever worn.  Having my group of supporters with me that night helped shake off the jitters and I felt so loved by them all.  My dancer partner Juwan was a professional as always and made me feel like I could accomplish anything.  Even though I made quite a few mistakes, we ended up taking home the Judges Choice award for best dance and the night was finally behind me.  

Overall amazing experience… but definitely happy to have it behind me.  

While I was running around training with DWTS, the team was moving all the other pieces of the Foundation along.  We completed an amazing campaign for our Cancer Messed With product with the help of many wonderful people in the community.  We hope you enjoyed seeing all of the “Cancer Messed with the Wrong City” shirts as we spread love to cancer patients everywhere with our #cancermessedwith social posts.  Thanks to our continued Angel investor, we are starting to double down on CMW and you will see lots of exciting changes with the product coming in the next quarter.  If you don’t follow CMW on Instagram, be sure to so you can watch everything come together.

Karen Murphy

Our head of Corporate Sponsorships has been KILLING it this last month.  Karen Murphy continues to blow me away each month as she does a great job communicating with our sponsors about what we are doing at ISF.  Of course, our largest partners continue to see the importance of what we are doing here in the community and come back year over year.  Brighthouse Financial, Community Blood Center of the Carolinas, Modern Nissan of Lake Norman, Scoop Charlotte, Atrium Health, Mass Mutual Carolinas and Noda Brewing Company have once again aligned with us as sustaining partners and we appreciate all they do for us.  Karen is meeting with people every day and we love seeing new companies as well as continued partnerships signing up to be a part of our mission.  We still have a couple of sustaining sponsorships available so contact Karen if you are interested.

Kerry Winslow

Speaking of Corporations, Kerry Winslow our Director of Corporate Philanthropy has been plugging away at our first ever Networking Event scheduled for this month at the City Club in Uptown Charlotte.  As we try to expand our reach into the Uptown area, we feel that it is critical to get our mission out to these companies.  Gene Woods from Atrium Health with be joining us for a meet and mingle to learn a little more about who we are and what we are doing for the city of Charlotte.  Educating the community on our impact is one way we hope to make a difference and Kerry is leading the charge in this effort.

Tia Wackerhagen

Our Three Wish Circle and Ambassador team is gearing up for another year of supporting ISF is a big way.  Our 3 wish members are such great advocates for us in the community because they really get what we are trying to do here.  Tia Wackerhagen, our Development Director is already in communication with these families to fine tune our giving society and hope to bring more members into this exclusive group of donors.  Our Ambassadors wrapped up a fundraising season that blew us away and we are hoping to bring them back this year as well as grow the team to continue to make a difference for the families receiving MIBG treatment.

Rachel Wood

Marketing.  Good lord is this a full plate.  Not only is our Director of Marketing, Rachel Wood, managing the day to day ISF marketing and social communication but redesigning the look and feel of ISF as well as our website.  We want to be able to provide the most up to date information on what we are doing in the community and the patients we are supporting and this job is never-ending.  Rachel was the brains behind the CMW campaign in February, organizing a meet up with our Make-A-Wish recipient Sydney, all of the Jersey Mike’s Month of Giving marketing and more.  Her to-do list every day gives me anxiety so I hope you are enjoying the content she provides!  It’s a ton!

Maitland Danner

And Maitland Danner. What would our foundation do without Maitland.  She is the jack of all trades.  The glue that holds it all together.  The voice of reason. The planner and everything in between that I didn’t mention.  She has her hands in every single detail of ISF and we could not run without her.

Our upcoming month is one of the biggest of the year at ISF.  We have so much happened that it’s hard to wrap our head around it.  Isabella’s 14th birthday is this Saturday, which is unreal to me.  Our partnership at the Community Blood Center of the Carolinas is the ONLY way for me to get through the day.  This is the BIGGEST blood drive we have ever had and we already have over 200 appointments.  We are hoping to creep up to 500 by Saturday and need all the help we can get.  We also hope to raise enough money to grant a wish in Isabella’s honor so help us if you can.

March is also Jersey Mike’s Month of Giving.  You know the event and why wouldn’t you support a business that directly impacts the Charlotte community?  And all you have to do is eat subs!  Throughout the entire month of March eat at 39 greater Charlotte Jersey Mike’s Subs, use the weekly coupons here, you can make an in-store donation and buy a cookie. 100% of cookie sales go back to the foundation all month long. What you save through the coupon, give back at the register! Easy!  The big day is March 27th, ‘Day of Giving’,  where 100% of sales go back to the Isabella Santos Foundation at participating stores in the Greater Charlotte area.  Last year we received $135,000… unreal! We absolutely love our Jersey Mikes partnership.

I’m want to take a minute to thank our amazing Board of Directors here at ISF.  This group has almost a full year under their belts and these people have been a godsend to the organization.  We are growing our board and our current members have opened doors for us that we never thought were possible.  The commitment these people have to our mission is unbelievable and we are so excited to expand our board next month by doubling our board seats.  It makes me excited to see our year ahead.  So thank you to the ISF board for taking us to the next level yet again.

Okay, so ways you can help this month….

  1. Schedule a Blood Donation Appointment for Saturday
  2. Donate to Help Fund a Wish in honor of Isabella’s Birthday
  3. Eat Jersey Mike’s Subs this month like it’s your job
  4. Eat at Melting Pot for their March Fondue Raiser
  5. Become a Sponsor
  6. Follow CMW on Social Media
  7. Purchase a CMW Shirt to Support Someone You Know
  8. Follow, Like, Share & Comment on our ISF Social Posts:  ISF Facebook, ISF Instagram, ISF LinkedIn
  9. Become an Ambassador for ISF
  10. Reach out to us!  Have an idea, what to get involved?

March is big.  Be a part of it.  Don’t just watch from the sidelines – get involved with us.  

Beer = Community Cheer!

Community is our future.  When our community comes together, that’s when a difference is truly made. Community is everything.  People.  Businesses.  Families.  Organizations.  We all become one.  Together.  NoDa Brewing Company,2018 ISF Sustaining Sponsor, sets the example.

NoDa Brewing Company always strives to bring the highest quality beer to our community.  But even more than that, they strive to make a difference in our community.

  • You Drink, We Donate.  NoDa Brewing Company supports over 100+ charities throughout the year, and one way they do this is by donating $1 per pint every Monday.
  • Fundraising for Free.  NoDa allows nonprofits to host fundraising events for free in their tap room. Drink a beer and learn about how you can give back! 
  • Beer Bonus.  NoDa also opens their hearts by featuring special beers that continuously give back to specific charities.  Pssst . . . . have you tried the NoDa Margarita Gose that benefits ISF?  

“Todd and I have four kids and cannot even begin to imagine what it would be like to have one of them, or our granddaughter, get diagnosed with cancer.  We’re happy to do anything we can to support families that are battling this terrible disease and hopefully finding a cure one day.” – Suzie Ford, Founder and President NoDa Brewing Company

So we say CHEERS to NoDa Brewing Company!  Beer = Community Cheer!

Pounding for Parker

Parker and his brother

It’s no wonder why so many people are pounding for Parker. His strength, resiliency and determination are such an inspiration.

Parker was nearly seven years old when diagnosed with a very rare tumor on his spine. His cancer, which originated between one of his vertebrae, runs from his tail bone up into his lower brain. Because the tumor was mixed in with nerves in his spinal column, it was too risky to remove. So Parker underwent two different types of chemotherapy, which he completed in May 2017.

He also has more nerve damage in his left hand, but doesn’t let that stop him. Today, the fun-spirited nine-year-old is in third grade and has resumed school and his favorite sport – lacrosse. As part of his ongoing therapy, Parker continues to get monthly checkups and quarterly MRIs at Atrium Health’s Levine Children’s Hospital.

“He’s doing really well; living life like a normal kid and being a great big brother,” said his mom, Allison. “He has lots of energy, a good sense of humor and is very driven.”

Pounding for Parker Foundation check presentation to Levine Children’s Hospital

Because Parker may need additional therapy in the future and that there is no cure for his disease, his parents – Allison and Jonathan – launched the Pounding for Parker Foundation in 2017. The Foundation hosts an annual golf tournament, gala and other community events to raise funds to advance research for pediatric brain tumors and improve the quality of life for childhood cancer survivors. In its first year, the Pounding for Parker Foundation presented $100,000 to the Levine Children’s Hospital Brain Tumor Survivorship Clinic.

Among the organization’s fundraisers this year is the Pounding For Parker Foundation Gala. It will take place on Thursday, October 4 at 7:00 p.m. at Sweet Magnolia Estate in Cornelius. There will be a silent and live auction, chef-prepared food stations, beer, wine and live music. In addition, the silent auction will be online starting Thursday, September 27. For more information, to purchase tickets and to check out the silent auction, visit https://poundingforparker.org/event/.

“We’re excited to be in the Charlotte community and to give back to Levine Children’s Hospital,” said Allison. “Our doctors are like family and have really been there for us. We want to do everything we can to find a cure for pediatric brain tumors and come up with solutions for the many issues that pediatric cancer survivors face.”

An Army of Support

Emily and Kevin know firsthand the impact an army of support can provide a family during a crisis. Their daughter, Claire, was 19 months old when she was diagnosed with Stage 4 neuroblastoma in 2011. They received an incredible outpouring of support and wanted to do the same for other families fighting childhood cancer. So they created Claire’s Army to honor Claire – who passed away in January 2012 – and to continue her legacy of her love for others.

Claire

“Our friends, family, employers, strangers and the hospital teams did so much for us during Claire’s treatments and our time of grief,” said Emily. “We wanted to do for others what others did for us.”

Through Emily and Kevin’s grief counseling at KinderMourn, time spent with other hospital families and discussions with medical providers, they realized that not everyone had support when going through a similar situation. This led to creating the following core programs at Claire’s Army:

CLAIRE PACKAGES: Claire’s Army provides a package to a new family facing a childhood cancer diagnosis at Novant Health Hemby Children’s Hospital and at Atrium Health’s Levine Children’s Hospital. The Claire Package utility tote includes towels, a journal, a gas card and additional comfort items. Valued at $150, the package helps make a family’s hospital stay more comfortable and saves them a trip to the store.

MEAL PROGRAM: Claire’s Army has several restaurant partners and a team of volunteers to deliver made-to-order meals to families at Hemby Children’s Hospital five nights a week. Their goal is to expand to Levine Children’s Hospital in the near future. Since starting this program in February 2014, Claire’s Army has delivered 4,000 meals, which offset a financial burden, provide options beyond hospital food and foster family time.

EMERGENCY ASSISTANCE PROGRAM: Claire’s Army works through oncology social workers to pay for bills to help families who are suffering financially. Emergency assistance can range from mortgage/rent payments, utilities and travel needs to insurance. In one case, Claire’s Army was able to purchase an airline ticket at the last minute for a grandmother to fly roundtrip from El Salvador to attend her grandson’s funeral service. To date, the organization has provided nearly $30,000 of emergency assistance through this program.

“We want to be able to help in any way we can and to make an already awful situation suck less,” said Emily who also spent a few years as a nurse assistant at Hemby Children’s Hospital. “As a hospital provider, it was heartbreaking to see what families go through during a diagnosis, especially if the family was alone with no other support.”

Claire’s Army hosts an annual gala – which raised $200,000 this year – and other fundraisers throughout the year. Funds support these core programs, as well as pediatric cancer research through nonprofits like the Isabella Santos Foundation.

“Claire’s life was very brief, but very impactful,” added Emily. “We hope that the work we are doing is an extension of our love for her and her love for others. We want to carry that on and help these families one at time.”

No Equipment Needed

Brian Levy, Isabella’s Dream Team

Brian Levy has always been athletic, but he has not always been a runner.  He grew up playing ice hockey and transitioned to mountain biking.  Over time, he realized it was easy to just go on a run.  No equipment needed.  No class required.  He trained for a couple of 5Ks, and he eventually ran his first half marathon.  He was hooked.

As he continued to grow in to his love of running, he learned about the Isabella Santos Foundation through his fiancé.  Since Brian runs by himself, she encouraged him to check in to the ISF Dream Team so he could share his passion with others and run with a group of people.  He knew immediately it was something he wanted to do.

Last year, Brian joined the ISF Dream Team.  Hearing everyone’s inspirational stories kept him motivated to keep training and keep pushing himself.  He accomplished several races while training with the Dream Team:  Chicago Marathon, Rock and Roll Marathon in Savannah, two Half Ironman Triathlons, and the ISF 10k. WOW! 

With that said, we are truly honored to have Brian Levy leading the ISF Dream Team this year.  As he is striving to accomplish his goals (qualify for the Boston Marathon), he knows he is accomplishing even a bigger role (making a bigger contribution in the fight against cancer).  

“I know that my strengths are with training and coaching other athletes.  I’m looking forward to helping other runners achieve their goals of training for their big race and in the process, introducing more people to ISF.” 

Brian is making a difference, in so many ways.  Running.  Leading the ISF Dream Team runs.  Fundraising for ISF.  “I know my contribution in the fight against cancer is small in the grand scheme of things but I think that’s what it’s all about.  A lot of people making small contributions can make a big difference.  Every time I am out there running in my Dream Team shirt or talking to people about races about ISF, that’s my little contribution to the big fight.”

Thank you Brian for leading the ISF Dream Team.  Let’s help Brian meet his goals this year by supporting him through his First Giving page:  https://www.firstgiving.com/fundraiser/teamba/2018-Isabella-s-Dream-Team

ISF Dream Team

The ISF Dream Team, created in 2014, is a running group that assists you in training to run the race of your dreams.  You can train for a 5k, 10k, half marathon, half marathon relay, full marathon relay, or a full marathon.  You are provided a training schedule, invited to group runs, and inspired by a phenomenal team of people.  Not only will you meet a dynamic group of people, but you will also be inspired through your friends and family as they support you through the training.  The ISF Dream Team has raised over $400,000 to date, with the funds contributing to our local Charlotte community.  If you want to join the ISF Dream Team, we would love to hear from you.  Please email us at info@isabellasantosfoundation.org.